Saturday, August 29, 2009

Chemo Day Eight

It's amazing how this roller coaster can change from climbs to dips to lightning speeds to terrifyingly slow crawls so quickly. Two weeks ago I said that I didn't mind going to my chemo infusions, that I actually looked forward to them because I knew it was one step closer to getting better. Well, that perspective completely changed with this eighth infusion - the completion of my fourth ABVD cycle - two more cycles (four more infusions to go). 

It took every ounce of mental strength I had to get to this infusion. Maybe it was because it was the first time I was driving myself there. Maybe it was because it was a Thursday and I knew the usual crew wouldn't be there to meet me. Maybe it was because I never quite bounced back this time around. Maybe it's because I'm just getting damn sick of feeling sick. The whole premise of chemo is so counterintuitive. The only way to ensure that you can beat cancer is to subject yourself to these drugs that make you feel awful. I've had much more debilitating side effects from the chemo than the cancer itself. At least that's what I feel like now. The cumulative effects of the chemo are really starting to kick in - it's not nearly as manageable as it was for me in the beginning, and I don't know how much more my body can hold up to. 

The morning went as normal. I packed my chemo bags - one with healthy snacks and lots to drink, the other with a sweatshirt, my laptop, book, magazines, thank you cards and other things to keep me busy. But when I got in my car to actually drive myself to the cancer center I lost it. 

The day was beautiful - crisp 70s, no humidity, the sun was shining and I was livid that I had to be stuck inside, hooked to an IV for five hours. I did everything I could to prolong actually getting there. Hmmm, I didn't have any fruit this morning. I should stop at Starbucks for a smoothie. I dillydallied there for as long as I could. When I walked in I felt like everyone was staring at me. Most of the time I don't even notice other people, but when I get into these super sensitive modes it's all I notice. I feel like people whisper, like they're looking me up and down trying to figure out what's wrong with me. Is she going through a sex change? Is there no hair under her hat? What is that thing sticking out of her chest? Does she has three nipples? Why is she wearing fuzzy slippers on a hot summer day? 

In retrospect, I'm sure no one was even looking twice but sometimes I feel like I have a neon sign flashing on my chest that reads: "Yes, I am young, but I have cancer. No, I didn't do anything wrong. I was healthy and now I am sick and am going through a lot of shit so what's your excuse?" Sometimes I hear people bitching and complaining and I just want to scream: "Do you know how good you have it?!" Of course, I don't know how good they have it. Everyone has their baggage, their bad days, their emotional days and I know I have no right to think that my situation is worse but sometimes these awful feelings of resentment take over that I just can't control. 

In Starbucks Bob Marley's "Every little thing is gonna be alright ..." was playing. Normally, this jam always gets me in a good mood. I listen to a lot of raggae lately, especially during chemo as I like the relaxing beats and it makes me think of the beach and sunsets and sand between my toes. But this day I wanted to rip the speakers out of the walls as the smoothie machine whirred with my banana and strawberry puree. "Don't you understand - everything is not going to be alright - not for a long, long time." 

I got back in my car and my eyes welled until I couldn't control it anymore. I just bawled and bawled, choking on my own tears and bawled even more when I would catch my pathetic face in the review mirror. Again, I have never been a crier and have always had complete control of my emotions. But now? There is no question who is boss. My appointment was at 10:15 a.m. It was 10:10 a.m. when I pulled up to the cancer center. I couldn't do it. I couldn't pull in the entrance.

I kept going a few parking lots down and pulled into an arts magnet school that I didn't know existed. I chose the furthest parking spot so that know one would see me, this heaving wreck in the driver's seat. I sat there and gave myself a pep talk to pull it together. I was literally talking out loud telling myself I could get through this. Telling myself that I didn't have a choice, that I needed this medicine or I could die. I truly could die and I needed to suck it up and get my sorry ass in there. I told myself: I've done this seven times before, seven times, and I survived all of those. Why would this be any different? 

I reached deep inside to a place that I've visited a lot through all of this and found the strength that I needed. All throughout this cancer battle the two words, I guess you could call them mantras, that have helped me are "strength" and "peace." "Strength" in the sense that I need to ensure that my body and mind are as strong as possible - that my inner strength and the strength of those around me will carry me through - it's all I have. "Peace" in the sense that this is my end goal. I want peace in my body, peace back in my life. I want the battle to be over, to be able to breathe and not have it hurt. To be able to wake up and jump out of bed ready for the day at peace with what I've gotten through and at peace with whatever challenges and rewards come next. 

With strength and visions of peace I wiped the mascara from under my eyes, tried to dull the redness, turned the engine, dropped in the clutch and creeped two driveways down to the cancer center to make it to my appointment just three minutes late. 

Though the lab tech taking my CBC was so sweet I could hardly muster a smile. I was afraid that if I spoke I would lose it again so I just sat there as she pricked my finger and squeezed my blood into a vile. I waited in silence as my blood levels were collaborated in the machine. When I got the copy of my printout I knew it wasn't good. 

I met with another doctor in the practice who looked up my history and noted that my white blood cells and granulocytes were at the lowest levels they've ever been. The printout had double stars and double "L"s for low - I've never seen this before. My WBCs were 2.4 K/uL (reference range is 4.1-10.9). My granulocytes were 0.3 (reference range is 2.0-7.8). He told me that he was very hesitant to treat me as that it would only make it harder to bounce back and I'd be even lower before my next treatment. He must have noticed that I was ready to scream, cry or faint. I dragged myself here. I was going to get treated. 

"But, I'll treat you. Only because you're wearing that shirt," he said. I was wearing the "Stupid Lymphoma" t-shirt I ordered from I'm Too Young for This courtesy of my Arts Council friends. These funny t-shirts have really gotten me through a lot. 

Thank God. But my treatment was on that condition that it would be followed up by a much more aggressive use of Neupogen the following week to boost my counts back up. So I'm going from my usual two doses to a shot in the arm every, single day next week. This means much more bone pain to look forward to as the Neupogen forces my bone marrow to work overtime. He also explained that he was hesitant to take me off schedule because I am on a curative regimen - to mess with the every two weeks schedule is to mess with my survival rates and no one wants to do that. 

I asked him if my low counts were why I had been feeling so fatigued and lethargic-much more than ever. He explained that I am at the roughest point of the Hodgkin's treatment. That now is the point when most patients really start to feel the cumulative effects of all the drugs. That my bone marrow is fatigued, which leads to my general fatigue - both physically and emotionally. 

"You have a lot behind you, but still a lot more to go," he said. "That really weighs on people." 

Hearing that made me feel normal again. It's not me. It's all part of the process - not that it makes that process any easier. I've discussed this phenomenon with other Hodgkin's patients. Yes, we've got the "good" cancer - it's curable, unlike so many other types of cancers. However, that doesn't change the shit we have to go through to get cured. It doesn't change the here and now. The emotional and physical tolls. The strained relationships. The self doubt. The questioning. The straddling of lives between who you used to be and who you are with cancer. Yes, the thought of knowing that this isn't a death sentence helps get you through the really tough times, but it doesn't make those times any less tough. 

So I picked up my bags and settled myself in a chemo recliner. My mother and grandmother showed up to keep me company and that helped distract me from my angry thoughts. Then five hours later the IV machine beeped that the final bag of meds was done. My port was unhooked and it was over. Another one down. Just like all of this, it's only temporary ... 

Now as can be expected I'm feeling pretty awful. There's so much that I want to do but my body is like dead weight - so tired - while my mind is going a mile a minute from the steroids and from my anxiety. Monday is a big day. I have my PET CT Scan. Dr. Dailey's hope (and all of ours of course) is that the results will come back cancer-free. This is why he wanted to wait until I had four full chemo cycles under my belt to ensure that it had time to do it's cancer killing. 

I've never been so scared about something in my entire life. More so than the first PET Scan. More so than my biopsy. Good or bad results they're going to change my life. Even if the cancer is gone I will complete the final four chemo infusions to make 12 for good measure. And if it is gone, now what? How long will it take to be healthy again? If the cancer's not gone then we look at other options ... options I can't even get my head to entertain right now. 


  1. Karin, thanks for your insightful blog, and for your comments about staying positive in the face of difficult circumstances. Your graciousness toward the world is an inspiring reminder of how strong we can be when we put our minds to it. Keep on fighting! And, btw, your dog is adorable!

  2. This experience sounds oh so familiar at our household. Just around the same time as well. It will get better. I hope your PET went well today. Steve got mentally prepared for his and the freakin machine was broken. Had to come back the next day. Thinking of you. You will make it through. This you know. Even though it's so mentally taxing, it will one day be a distant memory.